Advice to an Alzheimer’s Caregiver Newbie

 This essay was published a while ago for Teepa Snow's Positive Approach to Dementia Care (www.teppasnow.com) Free Online Monthly Dementia Journal.

Having re-read it, I feel it is worth publishing again here as a helpful list of how to be a good caregiver for someone you love who is living with Dementia / Alzheimer's Disease.

Advice to an Alzheimer’s Caregiver Newbie 

I am often asked, "What would you tell someone who just found out that their spouse or parent or sibling or friend was diagnosed with Dementia/Alzheimer's?" This is what I learned over the forty-one years my life partner Gregory and I were together in a committed relationship and over the twelve years that I walked the Dementia/ Alzheimer’s Path with him. 

I will not go into the different kinds of thinking necessary for different kinds of advice to give in different kinds of relationships, but rather tailor my comments to anyone being part of the caregiving team. I will also say, that just as there is no one way in which Dementia expresses itself, there is no one way in which to offer care! 

Be gentle with yourself. Forgive yourself. To be a successful caregiver partner, you must know that you will not always be successful. First, you are the one who can, must, and will change and adapt; they cannot. Sometimes you will fall short of being your best possible self! Every morning (or as often as you need to) in front of a mirror, repeat to yourself, “I am not perfect but at least I try!” Or the often-touted mantra, “Each day in each way, I am getting better and better!” If you don’t want to face the mirror, write it down in a place you can see it at the start of each day. 

Try, try again. Next, you are the one who must be “above it all,” knowing it is all about the disease and the person you love; but sometimes you will let frustration, anger, fear, exhaustion, etc. get the best of you. Remind yourself that you are only human. 

Know that each day will be a new one. Each day you will get a new chance to “make it right.” Try not to feel guilty or carry yesterday’s difficulties into today. Chances are your loved one will more easily be able to be forgiving and to start each day anew. Take advantage of beginning fresh each day. 

Interpreting behavior can be difficult. Know that sometimes you will not know how to interpret the behavior you are witnessing let alone how to deal with it or support the person you love. Try to put yourself in their place and think about how you would feel. Ask them for clarification or at least let them know you care and wish you could help. 

Respect the person living with Dementia. No matter what changes they go through, find a way to help them continue to keep their personhood even as their abilities fail. Help them to find alternative abilities to replace those slowly leaving. 

Respect the decisions of the person diagnosed. As much as possible, respect their right to be who they are, to make decisions for themselves, or at least to participate in making those decisions, to live their lives in the ways they choose. 

Be aware that decisions are not always able to be made by the person living with Dementia/Alzheimer’s. Sometimes and/or eventually, these decisions must be made on their behalf but always must be done ethically, with love and respect, and only in their interests (not your own) for safety and health reasons. 

Validate as you seek to understand. If your spouse expresses worries about financial matters, repeat their words to validate their concerns, and then tell them what your plan is. “Oh, so you’re worried about finances? I am pretty sure we are okay, but I’ll check in with our accountant to make sure.” If your mom is upset, but is unable to use language to explain what is upsetting her, validate her frustration. “Mom, I can see that this is hard for you, and I’m sorry.” This can also be where you need to put on your detective hat and get curious about what is upsetting her. Using visual cues and “Is it this or something else” questions, you may be able to figure out what her unmet need is. 

Try to maintain a team approach. In your relationship with the person living with Dementia (PLWD), make sure to include them in most decisions that affect them. If their ability to participate in the decision-making process is diminished or does not exist, offer the alternatives in bite-size pieces which continue to respect that they are or once were part of the team! If you are purchasing a new item, show them two similar items and ask which they prefer. Load the questions a little by offering, “I really like this one best, what do you think?” 

Be patient with the person. Their processing and understanding of the day-to-day activities of life, both mental and physical, are changing. The cognitive abilities are slowing down and/or the connections are no longer as easily made. Abilities may come and go, may return in reduced form, and eventually no longer exist. When asking a question, give the person a chance to process what you said. Asking another question or clarifying too quickly only serves to create more confusion. 

Control your anger, as best as you can. Sometimes your frustration can cause anger. Sometimes the PLWD’s behavior can cause anger. Conversations gone awry can cause anger, especially when you have been used to successful conversations for such a long time. Imagine that the person diagnosed is slowly living life backwards, losing what they have learned. Count to ten, leave the room (don’t just walk out, say “I’ll be right back.,” and breathing deeply all can help. 

Remember, they are NOT children. What complicates the matter is that mentally, it appears they are becoming a child again, but the fact is, they are NOT children. They are adults, in an adult's body, with an adult's worth of experiences and knowledge that will be at a wide range of various and changing levels of availability to them. 

Accept repetition. Do this in conversations just as you would gently do for a very young child as he grows with wonder at the world around him, often with his asking the same question repeatedly with a string of Why? Why? Why’s? How you deal with your loved one should be similarly loving but with respect for the adult which they are even though they may slowly be losing their abilities and possibly their ability to wonder. 

Realize it is the disease. Differentiate between the person who you are continuing to love and trying to help and the disease. If they get angry with you, it is the disease. If they strike out, it is the disease. If they need you to repeat something for the hundredth time, it is the disease, not the person! 

Try to see beyond the behavior. Perhaps the person no longer can express themselves using language, perhaps they are no longer aware of what is troubling them. Maybe they are in pain but do not recognize it, let alone have the ability to let you know about the discomfort. At times thirst and hunger are no longer recognized let alone how to satisfy those basic needs.

Physical things are not always what they seem. At times a dark, reflective window can be a vast empty frightening place that is home to demons, and a dark area rug in front of a door can be a deep hole in which one might fall! If the memory fails, a loved one can erroneously become a stranger and a trusted friend can become a dangerous enemy. Close the shades at sunset, remove rugs, arrange furniture so it is not in the way of the route to the bathroom or bedroom. Assure them that you care and that you are there to help!

Put yourself in the person’s place. Work hard at imagining what might be troubling them. Then see what you can do creatively to correct, distract, and/or remove them from the situation. 

Create music and art activities. They can provide a person living with Dementia/Alzheimer’s with hours of productive fun as well as provide a sense of accomplishment and an opportunity for socialization with loved ones. Use headphones to listen to music from the PLWD’s era or that they used to be able to play. If artistic, but no longer able to practice their art, try to find a replacement. Reintroduce (careful if maybe insulting) coloring, crayons, pencil sketching, finger painting. 

Activities must be meaningful and foster success. Try to make the activity one where they can experience success and also one which will be meaningful to them. For example: household chores, help with meal preparation, cleaning up and setting the table, folding laundry, reading, watching TV, playing a DVD or video. 

Toys can help entertain. Many toys can provide sophisticated ways of spending time. Others, like dolls or Teddy Bears, if accepted, can provide something to do with the hands as well as emotional support and harken back to earlier memories. Crossword puzzles and jigsaw puzzles come with various levels of difficulty. 

Television, video, and DVDs can help. So what if the PLWD sits in front of the TV for a long time? Make sure what they are watching is calm as well as entertaining. Avoid news programs. Videos dealing with nature and animals are great. Musicals (usually older ones) that have an uplifting plot are good. Keep the volume loud enough to keep their attention but not so loud as to frighten them.

Tailor the environment. As a person’s needs change, so must the environment in which they live. Be careful about rugs that may cause a fall or furniture that may not support their weight. Keep sharp and dangerous items out of sight or under lock and key. Make it easier for them to find what they might need and try to keep everything in its place. 

Meals can become complicated. When eating at a restaurant, help guide the PLWD through the choices depending on their cognitive abilities which can range from “What do you feel like eating today?” to “Do you want chicken or fish?” to “Oh, this chicken dish looks good, shall we try it?” Meals at home, if causing difficulties, can be served one course at a time, be easy to pick up with fingers, be easy to chew and swallow. Sometimes the color of the table, table cloth, and/or dishes can soften dinner time difficulties. 

Be flexible. As the diagnosed person's needs change, so must their activities and environmental change. Every day might need a different approach to almost every possible activity: toileting, grooming, eating, dressing, spending time, sleeping, etc. 

Be aware of medical changes. Some of the changes may not be apparent so if you see a change in behavior that is not explained by anything obvious to you, and that seems to last for an inappropriate period of time, maybe it is time for a visit to the doctor for some tests. Infections, digestive problems, or physical injuries are just a few that might be happening but not visible to you. 

Be selfish. Most people will be taken back by this term, but I maintain that if you do not take care of yourself, you will not have the energy or health to give to another. Find ways to relax, refresh yourself, getaway for a short period of time, make sure you visit your own doctor as needed, and enjoy yourself when and as you can. This is important. Statistics show that often caregivers die before the PLWD because they are so busy taking care of the PLWD that they do not take care of themselves.

Ask for help. This is a difficult one. First of all, it does not mean that you are weak or not doing a good job. Second, finding ways to involve other people who love you and love the person diagnosed is not easy. Everyone has a life of their own and most are oversubscribed. But there are ways that others can help to lighten your day-to-day. Also, the PLWD will benefit from having “others” around them for whatever reason.

Look to your community for help. If not family or friends, check out the possibility of getting respite help from local high school or university students, from your church, from a neighbor, from your housekeeper, from your city’s Senior Citizen Center, from your local Alzheimer’s Association. Even an hour by yourself can help you keep your sanity. 

You can do this! What choice do you have, really? Hopefully, with support from family, friends, your religion if you embrace one, your therapist, your neighbors, a group of people in a support group or online chat room – you can find a support system that works for you. You will be strong and find resources to keep going. Love will help. Kindness will help. Being good to yourself, even though you are devastated, will help. 

You are not alone! In the United States, over five and a half million people are living with Dementia/Alzheimer's and this number is growing. 16 million people are helping to provide unpaid care for them. This includes over 18 billion hours of care at a value of over $232 billion dollars! 

Waxing philosophical: It will...get better ... but sometimes better is not on this side of life. We all will die. For some of us, it will be easy, quick, and/or unexpected. For others, dying will be anticipated, slow, and/or very painful. Doing our best to help others reach their end as comfortably as possible is the best we can do and to hope in turn that it will be offered to us! It is a blessing to be able to do this for one another. 

Usually, a parent wins the race to death. While one might say “they lived a long healthy life” or “they had a blessedly wonderful life,” often that does NOT lessen the grief and feelings of loss for the children; even if the parent is “in a better place” or “no longer in pain.” Sometimes these platitudes help, other times they do not! 

With a spouse, who wins the race? Either you or your partner will “win the race.” Interestingly, the person diagnosed with Dementia does not always win the race! Often the caregiver partner is the first to cross the finish line and to leave this life. 

With a sibling or friend who wins the race? The contest may have either one of you be the winner. 

Have conversations about death with the person dying. Do this while they are still able to express themselves, it helps them to die with dignity and helps you to serve them in a way that follows their wishes as closely as possible. 

One size does not fit all end-of-life conversations. Again, there is no one way for these types of conversations to take place. They may take place easily or they may be a very difficult topic to broach, for some or everyone involved. You must determine whether to continue these conversations depending on how your loved one reacts or if they let you know they do not wish to have these discussions! You might drop the subject and try to bring it up again at a later date. 

Grief always takes its toll. It is never easy when someone we love dies. Talking about death helps, in the long run, to ease the mystery of life and the mystery of death. Telling our stories to each other and listening to the stories of others, gives us a common ground that allows for grief to express itself. 

There is no one right way to grieve, no time period in which it should take place, and no right or wrong way to do so. People will try, good-naturedly, to tell you how to grieve. They will share their experiences with grief. They might say something like, “It’s time to move on.” Or “You need to get back to your life!” They might suggest all kinds of ways to make your grief easier. You might experience similar approaches in books you pick up or that others give you. In some ways, one never gets through or gets over grieving, it just becomes a little easier to carry the grief. The problem as well as the joy is that with great love, there is great grief! And each person grieves in their own way!

The greatest mystery in life is death. We think about it and fear it from the first time, as a child, we begin to have intelligent thoughts. We hold on to it our entire adult life and it can color how we face living each day. Hopefully, death’s mystery also allows us to live a meaningful, fulfilled life with respect, love, and understanding for others and for ourselves during the time we have available. 

You are not alone! You can do this! Believe in yourself! It will not be easy but it can be done well! A diagnosis of Dementia/Alzheimer’s does not have to be a death sentence but rather can be an invitation, not necessarily an anticipated one, to live life to its fullest! 

Escape to Paradise

Just came across this essay again. Good enough to post a second time.
First posted in April 2019

Escape to Paradise: An Alzheimer’s Love Story

Michael A. Horvich

March 2019

In a recent post, Madisyn Taylor, who writes for the Daily Om (dailyom.com,) talked about how choosing not to experience emotions; pain, anger, or other intense feelings could cause them to become buried deep into your physical body. 

Throughout our lives, we may experience emotions that disturb or distress us. Often, our first reaction is to push our feelings away. We may say, "I don't want to think about that right now, I'll think about it later" and we bury our emotions, deny the validity of our feelings, or distract ourselves with other concerns. 

But the diverse emotions you experience are neither good nor bad--they are simply a part of being human. Choosing not to experience pain, anger, or other intense feelings could cause those feelings to become buried deep into your physical body. 

There, they may linger unresolved and unable to emerge, even as they affect the way you experience the world. (The implication is that these unresolved emotions can rise from deep in the physical body to cause illnesses to express themselves.) 

This brings us to the point of this essay; I wonder if Gregory chose to escape his life through Dementia/ Alzheimer's?

Disclaimer: Gregory's parents were loving and supportive and gave him an environment in which to grow up that was safe, clean, healthy, and loving. He wanted for nothing and went to the best schools. But this was growing up in the '50s through the '70s and life was different then, parents were different then, especially in the middle and lower upper classes, child rearing was usually stricter than it is today. I am not saying that Gregory's parents caused his need to escape life, but like all of us, the childhood environment no matter how good, can cause difficulties in the adult future. 

Gregory grew up with a very strict mother who always had her way when it came to how Gregory spent his time, how he performed in school, what activities he chose to follow, how often he practiced his piano lessons, how he spent his weekends. He was a very independent child but knew how to stay within the boundaries his parents set for him.

Family expectations (mom and dad as well as two ten- and fifteen-years older brothers) always placed Gregory first. He was the most educated, most sophisticated, most compatible, most compliant, most well-behaved child. He was inquisitive and intelligent and talented as well. He was the perfect young man, dressed in the blue blazer with tie, who at a very early age learned how to make Manhattans for his parents each evening at cocktail hour. He enjoyed his time spent with adults and often "bartended" at his parent's parties.

He was the perfect gentleman with perfect word use, perfect pronunciation, perfect grammar, and perfect posture. "Now Gregory, you are going to want to watch your posture," his mother often told him.

He had many friends and for the most part, enjoyed his childhood. He was an altar boy, a boy scout, a responsible baby sitter to his brother's children, a teacher's favorite, a straight “A” student, and even at an early age was designing houses and drawing mansions. His mother would complain, "Now Gregory, people do not live like that anymore, put your mind to something more practical. As a teenager, he was well liked by his peers, stared in the high school plays, and would bravely go off with friends on adventures to New York City. 

His dad was a salesman and then a company executive director and most often on the road. When home he worked in his self-built conservatory tending to his orchids, some of which won prizes at the county fair. He was not one to play catch with his third son or go to the circus and share a box of popcorn. Helen is quoted as saying, "Ed, you ruined the first two, Gregory is mine!" And so, it was.

When young Gregory would go on hunting trips to the isolated, located on an island off Connecticut, one-room schoolhouse that his dad and some other male friends owned, Gregory never would shoot a gun, much to his father's dismay (and probably embarrassment.)

While Ed loved Gregory, Dad's opinions were judgmental and biting: Don't be such a sissy! Going to Harvard was your mother's idea! How can you not read the newspaper every day, where will you get your information about the world? Computers are worthless, why bother learning about one or using it? I cannot believe you don't watch the news on TV every night! Most people are not worth their salt, don't become one of those.

Towards the end of his life, although Ed always was a "drinker," he lost control of social drinking and became an alcoholic, we assumed to self-medicate from his difficult childhood with a difficult mother and an absent father who deserted and spent his life as a riverboat gambler. As an adult, Ed worked a difficult career and now at home and retired, lived with a difficult wife.

Daughters-in-law complained that Helen was controlling. Once she and Diane had a major argument over how to peel Thanksgiving potatoes: with a peeler (Diane's tool of choice,) or with a paring knife (Helen's tool of choice.) She always had suggestions or a raised nose about how her grandchildren were being raised. She always groomed herself, dressed, and spoke properly and was always concerned about what other people in the community would think about the family. She was an excellent cook.

She knew Gregory was Gay, and that I was his lover (term of the day before "partner" or "Husband,") but probably thought her son was "perfect" and not “that kind” of Homosexual and low-life like the others she read or heard about.

Gregory's mom softened over time and even more after Ed's death. She went from stating, on hearing the news talk about the increasing death rate among Homosexual men due to HIV/AIDS, saying, "They deserve to die!" … to calling me "Her Favorite Daughter-in-law!"

She always bragged to family and friends about Gregory accomplishments but also let him know about those which she felt were failures. She had an opinion about most things which was usually not open to discussion. She was a devout Catholic.

Helen would drive Gregory twice a week to Elkhart Lake, Indiana; thirty minutes away from their home in Goshen, for piano lessons. She would sit close to him and the teacher so she, an accomplished pianist herself, could make sure she could follow up on the lessons when Gregory practiced every day at home.

Gregory would tell childhood stories of playing fairly complex piano pieces at recitals, with an audience full of other student's parents, his family, and friends, as well as strangers and because of the stress, messing up with "clinkers" at the end of the piece ... sometimes on the last note.

As a college student, Gregory gave up playing piano after close to fifteen years of practicing daily. Sometime after Gregory and I created our loving, peaceful, calm, respectful life and home as a same-sex committed couple, he reclaimed his piano from his niece Renee, who has been keeping the piano "on loan" since she too played.

Slowly he rebuilt his skills and began to enjoy playing the piano since it was now on his own terms, with no pressure and no expectations from others. At one point he learned an athletic piece, Chopin's Ballad 23, which was the type that Horwitz, the world-renowned pianist, would play as an encore.

He was still shy of playing for others (not me of course) who would often request him to do so. He would be embarrassed and end up "messing up." One day he devised a way of being more comfortable with "showing off." In front of family or friends requesting him to play the piano for them, he would pretend himself to be an instructor and intellectually introduce the requesting audience to the piece he was about to play, the composer, what to look for, what to understand about the parts of the piece. This seemed to help relax him and he was able to get through the piece without error. Mission accomplished.

One time when his mother was visiting us in Evanston, he played a Chopin piece for her and messed it up a little. Helen, probably thinking that she was being the helpful mother, told him "Now Gregory, don't go and lose that one!" He blew up at her in a way I never had seen him do at anyone for any reason, pounded on the table causing the flowers and vase to topple, told her she was the reason he quit piano in the first place, and it was none of her business if he "lost this one" or not! They did makeup with Helen marginally admitting her part in the explosion.

Gregory attended Wesleyan University in Connecticut and then graduate school at Harvard where he studied Architecture with Phi Beta Kappa recognition. He was a good student and loved learning. Wesleyan was more to his liking as they treated students with respect and like adults, guiding them as well as allowing them to tailor their education to their own needs. Harvard and its professors were more cookie cutter, this is how it is, our way or the highway! He often voiced his dislike of the Harvard Education he received.

Gregory married Barbara and the relationship lasted for seven years. There were no children. While the relationship was loving, Barbara was always a "man-ish," in charge type of wife (like Gregory's mother?) Barbara was very unaware of her grooming, dressing choices, social skills, and personal presentation manner. Gregory undertook, successfully, to influence and instruct her in these feminine traits.

They moved from Boston to the Chicago area where she was director of at the Ryerson Conservation Area in the Cook County Forest Preserves. Gregory became a stay at home husband and spent his time trying his hand at writing fiction. He also kept house and cooked dinner.

He became lonely for male companionship and joined an "awareness group" which met on Chicago on Monday nights. This is where we met and both of us tell the same story, that we fell instantly “in lust” on first seeing each other across the room at a meeting. Gregory was still married to Barbara, although he considered himself a Bi-Sexual man and had a lover back in Boston. Barbara knew this before she married him. I was involved in a now crumbling thirteen-year relationship with a man.

After "falling in lust" Gregory and I came to be friends and fell in love! Gregory and I courted for a year before ever consummating our relationship sexually. This was unusual if only because it was a time when people, gay or straight, were hopping into each other's beds more quickly than rabbits can multiply. Gregory and Barbara decided to divorce, Robert and I broke up, and in the second year of Gregory and my courting, we made a commitment to each other and to our relationship and moved in together.

I was teaching at this time and for twenty more years. I went back to school and earned my Master's Degree in Education with a specialty in Gifted Education. I retired from teaching at 50 years old when the State of Illinois offered a teacher buy-out. 

After his divorce, Gregory worked for a family as their private chef and then became a social worker caregiver for a residential program for developmentally and emotionally disabled adults. Next, he worked in Contract Design, which provides design for business and commercial spaces. Following that, he worked for an established interior design firm, decided to do his internship for his Architecture license and eventually became a partner in the firm. (At Harvard he had finished all of the Architecture Department requirements for licensing except for the internship.)

Several years later the partnership was dissolved and Gregory created his own Architecture and Interior Design Studio. Gregory Maire Architect, Ltd grew to five staff and did high-end design and architecture for condos on Chicago's Gold Coast as well as in Chicago's exclusive north shore suburban communities. His work spread as far as New York City, Key Biscayne, Coral Gables, and Saudi Arabia.

Using my training in earning an Advanced Certificate in Education Administration and Supervision, I ran his firm. Our joke was that Gregory knew I wouldn't embezzle too much from the business! The firm operated out of our smaller cottage type home in the attic with meetings and staff lunch taking place in our kitchen and dining room. We had some privacy because our master bedroom/bathroom was located in the attached "mother-in-law" apartment.

Eight years later, we moved to a new property, located two doors down from the cottage, that consisted of the neighborhood's original 1896 frame farmhouse on the front (now two, two bedroom rental units) and a 1915 brick loft building on the back of the property which housed the architecture/design studio on the first floor and our home on the second and third floors.

We moved into the new space two months before the World Trade Center attack on September 9, 2001. That event changed so many things including how people, even the wealthy, spent their money in a time of such unknown. Obviously, this had a major effect on the firm. We struggled to find enough clients, keep them happy, find and keep good staff, and afford (using personal funds when necessary) to pay the staff even when there was not enough work to merit keeping them. Gregory felt a responsibility to the staff and their families and held to the determined idea that eventually we would again have enough business to survive. He wanted to keep our excellent employees on until the turnaround.

Working with high-end clients in an architecture/design setting can at times be difficult and stressful. Most often Gregory got along well with clients but often the clients felt entitled to his firm's talent but did not want to pay for it. Often, they were fussy about the little things and overlooked the big decisions until too late. Often times when they could not get their way, or when "their way" outstripped their means, they needed someone to blame and the Architect or Designer become the scapegoats. Gregory had a saying, "I should require my clients to live with the homeless, with the street people for one month before we begin work planning their new home!"

For the most part, Gregory was calm and patient and worked very well with his clients. He knew how to listen (and to hear) what they were saying about their needs. Often, he inadvertently became the clients' social worker and psychiatrist! Building a new home often creates unspeakable tensions between husband and wife, releases pent up difficulties that already exist, and sometimes eventually led to divorce. For some single female clients, he became their confidant and an escort to parties and events.

While he always appeared calm on the outside, I never really thought about what it took for him to carry off these business and social relationships and how difficult it must have been for him. He always seemed to keep his cool but did he bury it and if not, how did he release the steam?

I do know it was not easy running a successful business, providing an income and safe space for one's employees, paying the bills, wondering when the next job will show up, being an intermediary between client husband and wives, settling financial grievances, accounting for overruns, time delays, city approval decisions, unexpected expenses, and at the same time taking care of personal needs and those of your life partner.

I was always was there to be supportive, took some of the difficulties off his shoulders when I retired and began running the business, and provided him with someone to talk to about these difficulties but I am not sure, in looking back, how mindful and aware I was of what he was going through on a daily basis. Was he really that content or was he subverting his feelings? He was such a good person, that I truly believe he wanted only to do good and this was his barometer for living his life.

I now can see that his growing up "need to be perfect for mom and dad" continued in his needing to be perfect for the business, for his employees, and even for me - his life partner. I cannot begin to imagine the pressure he put himself through in trying to meet his own expectations as well as other's expectations for him.

I remember an awareness we had midway through our forty-one years together. I am the kind of person that asks thousands of questions and always wonders about things. I believe that this is a good attribute but can see that it would also be aggravating and draining on a relationship.

After a blowup about one of these "question/wonder" sessions it, he revealed that he felt under obligation to have answers to all my questions and often didn't have them. He felt that I expected him to know all the answers and that I lost respect for him when he didn't. He felt that all his family and friends had similar unfulfilled expectations.

I helped him understand, at least in my situation, that my questions and wondering were more part of an out-loud query into life without expectations for answers. It was a way for me to look at what I knew, what I wanted to know, what I didn't know, and how I could work this out for myself, but also as part of a "conversation" with him ... not session needing answers from him. I assured him that I did not expect or want him to have all the answers but rather be a life participant with me in finding the answers. After this blowup, our relationship worked better in these types of encounters.

What I first noticed of the Dementia/ Alzheimer's changes in Gregory was when he began to lose his confidence in dealing with clients, with "making it alright" especially for the ones who blamed him based on their own greed and/or indecisions. At that time, we did have some client doozies including one who I would label emotionally disturbed, and several who were just assholes, not nice people! Most of our employees were excellent but one needed to be fired (this is always very stressful) for not having the ability to "keep up" and one who was so self-serving that he was subverting Gregory's efforts with several clients was fired a few months later.

As part of the changed Gregory, he admitted to me when questioned once, that he tried not to talk to me about his feelings because he was embarrassed and because he felt that if he worked even harder, he would make them like him more and not be so angry and defiant! He felt that he was failing them! Hearing this was so moving, tear causing, and disturbing to me. This was so not like the Gregory I knew.

Gregory was NOT a VICTIM of Alzheimer’s ... but rather a HERO. Gregory did not SUFFER from Dementia/Alzheimer's, but rather LIVED as well as possible, refusing to accept the diagnosis as a “DEATH SENTENCE.” I never referred to the diagnosis as his but always our diagnosis.

We were relieved on receiving the diagnosis because now we had an idea of what we had been experiencing and we could prepare for the future … although at the time we did not really understand the nature of the roller coaster ride we would be on until his death. 

Being able to monitor and provide for Gregory’s increasing needs, in a respectful understanding way, yet not letting him become overly frustrated was more and more difficult. 

My role in providing for our life experiences continued to increase over time. My main job became making sure Gregory knew WHO he was and WHERE he was. That he was in the RIGHT PLACE doing the RIGHT THING at the RIGHT TIME. And if lost; physically or emotionally, that I/we would always find each other.

He always knew who I was, his love for me and my place in his life. He knew he could trust me, that he was safe, loved, valued, and respected. The times were not easy, but we persevered and did a good job! I was able to support him by helping him to be free of daily worries, responsibilities, and fears. I was able to help him compensate for his changing abilities while always trying to make sure that the respect and communication which defined our relationship never faltered. 

Yes, there were times when he became depressed, sad, frustrated, and fearful … but most of the time he was content and happy. The same Ying and Yang was true for me! Gratefully, I was retired and had all the time in the world for him … and for us.

We had all of our legal arrangements and end of life wishes in order. Being a same-sex-couple, before marriage was legal in the United States, we also had to have all types of special “permissions” and “protections” in place.

We closed Gregory’s business and our time was now our own. We were fortunate that our financial situation was good. Each day our love continued to grow and our tag line became, “I love you more than ever!” Family and friends were available but they had lives of their own and even though they tried, they couldn’t really understand what I was going through and had little time to support us.

I made sure that our daily life was full, rich, and meaningful. We enjoyed our condo and living in a very active Downtown Evanston, Illinois. We entertained, enjoyed family and friends in our home, ate out, cooked at home, went to opera and theater events, and we were buoyed up by our pets with their unconditional love. We traveled in the U.S., Europe, and Mexico. 

We were able to simplify our life, only keeping the most meaningful parts. We continued to be compassionate with each other, ourselves, and those around us. Our life was filled with much laughter as well as many tears; joy as well as sorrow. Above all, it was filled with love, trust, and respect. 

As the Dementia progressed and we were no longer able to discuss together our experiences or difficult exchanges, I turned to my computer to write. This helped me process my understandings and emotions … kept family and friends up to date on our journey … and shared with others who might tune into the BLOG I created. Essays and poetry just seemed to leap forward onto the page. In over five years I posted 1,500 entries with over 150,000 people tuning into the BLOG.

Gregory's medical and physical needs became so great during his last year and a half of his twelve years with Dementia, that short of turning our home into a fully staffed 24/7 hospital ward, I was not able to provide for his needs. I found an excellent memory care facility 10 minutes from home and I could easily visit every day and sometimes twice.

I felt some guilt at having to move Gregory to a memory care facility. However, his new sense of community and belonging, the safe clean environment, the delicious meals, the medical support, and the presence of many people around him were all positive attributes of my decision and contributed to his well-being. He never once complained or asked about being in the new place and never once asked to "go home."

Slowly, Gregory disappeared. I hate to use this expression but it is apt. He was still there, his essence and spirit and soul still shined but he slowly shut down, his interaction with me and with his environment narrowed, his world became smaller and smaller. He no longer had necessary use of language although could still use a word or two appropriately. He could no longer feed himself or toilet himself. He could no longer consistently let me know he was thirsty or hungry although once and a great while he would surprise me with "water" or "pretzel" or "chocolate!"

Over the twelve years that Gregory lived with Dementia/Alzheimer's his needs, abilities, and language use diminished but he did not complain and often seemed not to notice. He no longer had ambitions, desires, fears, hopes etc. He just was. He still enjoyed life, food, music, visits from friends, TV, and my being with him. Sometimes he would be sad, but not often. Sometimes he would be angry or frustrated, but not often.

In some ways he was becoming like a Buddhist Monk who was giving up all things material and physical, clearing his thoughts and mind, holding no attachments to things, needing no possessions, living each day without regard to the next, no longer fearful or thinking about death, living inside of himself. It was as if he was just preparing for his death, for finding his way out, by being peaceful, living quietly and simply.

One day in early October 2015, I received a call from Hospice informing me that it looked like Gregory was preparing himself to die. He was non-responsive for three days. The night before he died, I crawled onto the narrow bed next to him. I hugged him and whispered, “Leave when you are ready. Don’t worry about me. I will miss you, but I will be OK.” If he needed it … I gave him permission to die. I had done this several times before.

Now here is what I call the miracle, and Gregory’s final gift to me. Before leaving for the evening, I kissed him goodbye on his open mouth three times, on the third kiss, having been non-responsive for three days, in a COMA, Gregory opened his eyes briefly and kissed me back. On the next day, October 4, 2015, Gregory died.

Was Gregory's early life mandated by parents and the one he subsequently chose as an adult cause him at a certain point to just say, "Enough, I need out." Did he choose Dementia/ Alzheimer's as his exit strategy? Was it his "classroom" in which to review his life and learn his last lessons? I still do not know for sure but strongly think, "Yes." And whether it was his choice or not, he left us as gracefully and compassionately, as he had lived his entire life.

Did Gregory choose Dementia as his exit strategy and if yes, what does this "choosing" look like? I do not know the answers for certain. Possibly this is my own interpretation, but I feel strongly that he did choose his path and I have been wanting to write about it for a long time. I hope that I am not doing an injustice to Gregory, his legacy, the memories other have of him.

Maybe he didn't even realize the intensity of expectations he set up for himself but I do know for sure he was probably the kindest, most loyal and supportive person I have ever known. Shakespeare's often used quotation, "The evil that men do lives after them; the good is oft interred with their bones,"  does NOT apply to Gregory. I do not think I have ever known a person who was so good, so loving, so compassionate, so supportive of others, so willing to listen. Not a bad bone in his body!

He has been dead close to four years now and his remains sit on a shelf of the bookcase in my bedroom; in a plastic bag placed in a red velvet drawstring bag nestled in his favorite Grandma Kerry's antique sewing box. Often, I bring him dark chocolate (which I eventually eat) and fresh flowers. On the shelf I also keep a photograph of Gregory, a perpetual electric candle, and some of his favorite things.

I often sit on the edge of the bed and talk with him about things and do a lot of thinking about the past: the past life we lived together before the diagnosis of Dementia/Alzheimer’s and the very changed one after the diagnosis. While very difficult living with and supporting Gregory for the twelve years he lived with Dementia/Alzheimer's, I did persevere. It did change me for the better with its many small gifts. 

I learned to love Gregory even more than I did already and now without qualifications. I learned to more carefully carry expectations for people. I certainly improved my writing skills and my communication skills. I was able to recognize that my purpose in life is to be a nurturer. The importance of being able to make others feel better has become more important to me. I realized that with very little "expense" I end up receiving so much back for sharing just a little love with others, especially during the time of my visiting at Gregory's memory care facility who so lacked that expression of love from others.

Did he really choose Dementia in any sense that one can imagine? Again, I do not know. But it is said that we can choose to be ill or to be healthy. Is it a conscious choice or one that lives on an invisible, spiritual level? Do we say one day, "I want to be ill?" or do our unconscious choices or our choice of life "vibrations" lead us to the illness? People will say of someone, "She chose to die." or "She was ready to die." but what does that really mean? How does it work?

Gregory used to say lovingly, when we heard of a family member or friend's death, "Well, they found their way out. We are still looking." From the day we are born, we face death. From the moment we become sentient we understand that we will die; as a child in childlike terms and as an adult in more intelligent, realistic terms. Some of us live out entire life in fear of dying and some of us are able to accept it more graciously. 

I miss Gregory but am not sorry that he has left us. Am I happy by myself? Yes! I had the most wonderful life with him, and I have all those memories. That is all we really are anyway, memories. And Gregory had a wonderful life too. He isn't in any pain and may not even know it's over, but I would ratherlive missing him than I would want him to live missing me. I love him that much. I wouldn't change anything. If I went back and changed one thing I didn't like, I might lose something that that bad thing eventually took me to. I didn't regret anything or think well, if I went back, I might do this or I might do that." As Edith Piaf sings in a favorite song of ours: “Non, Je Ne Regrette Rien”

What I do know for sure is that I just loved him. And he loved me. And that is enough.

ALZHEIMER'S: The Musical

A heart-wrenching love story: humorous, funny, often serious and sad with inspirational hellos and moving goodbyes, laughter and tears, sorrow and joy, across milestones and millstones, and across lifetimes and generations.

A musical love story that weaves together three tapestries into one masterpiece: A beautiful love story, Living with Alzheimer’s Disease, and Tracing Gay History from the early 1960s through today.

You will get to witness joy, sorrow, love, commitment, growth, change, faith, coping, compassion, belief, family and friends. 

Raw and honest but compassionate and uplifting. Gives hope to a situation which basically is hopeless and progressively more difficult. You will feel, however, uplifted when the curtain goes down!

• • • • •

Well, there you are. And you can giggle if you want to. Whenever I tell people the title of the musical I am working on, there is a brief moment of laughter then a change of expression to make sure they didn't offend! 

The idea of Alzheimer's Disease as a musical is funny, so laughter is appropriate. But why not a musical? If Tony can die in Maria's arms every night and sometimes twice on matinee days (West Side Story,) if a musical can tell a story about a lesbian who is dealing with her father's sudden death as she dives deep into her past to tell the story of the volatile, brilliant, one-of-a-kind man whose temperament and secrets defined her family and her life (Fun Home,) if people can be enthralled with the story of a previously, relatively little known father of our country (Hamilton;) why can it not be time for a beautiful love story between two gay men, one of whom is diagnosed with Alzheimer's, and the story of their life as they cover 41 years of living through the process of Gay Liberation?

I think the world is ready for this musical. Two years in the planning, one year in the writing, and just recently completed; the book (script and story with stage, lighting, and character directions etc.) I am so excited at the prospect of the musical becoming a reality on Broadway, I cannot tell you! 

• • • • •

The idea to write this post about the musical started out with the realization of the risk, the hard work, and the fear of it.

As an idea, one can roll it around in one's head with no repercussions. What I foolishly wanted was for someone to hear about the story and be so engaged that they would listen to and read my stories and blog posts and then write a wonderful, successful Broadway musical!

Slowly I realized that I was the only one who could tell the story since the story was mine (and Gregory's) and therefore I was the only one who lived it! It was a painful process, as writing usually is for me. It took close to one year (including many edits) to come into being.

First I began thinking and taking notes about the shape of the musical including the kind of musical scenes, dances, and conversations etc it might include. Next, I took notes on the important parts of Gregory and my meeting, falling in love, and becoming a couple for over 41 years. I carefully looked at the Alzheimer's journey Gregory and I traveled and how to show the ups and downs as the disease progressed. More notes were made on the Gay Liberation milestones we lived experienced over our lifetime together.

Then the writing of the draft began. Any author can tell you that the first thing they write is usually terrible and very painful. It is in the editing, the rewriting, the rethinking and rewriting that over time it becomes something of which the author can be proud. But write one must and only by getting it all out on paper, can the process to success begin. One needs something on paper to play with, to correct, on which to muse and eventually, maybe, arrive at the completion of the work.

I worked on creating descriptions of the characters, the settings, the order of the scenes and acts, the type of "Broadway Musical" schtick to include. I created an outline of the story and then slowly, meticulously, painfully began filling in each part of the outline. Editing of the story itself went on continuously and arranging and re-arranging of the order the events was a constant.

Slowly the changing, drafting, and editing slowed down and concentration on the writing of dialogue or the purpose of the various dances and experiences shared took over. 

When I finally got to the point of feeling "done" I was quite thrilled, but in many ways, the musical still only existed in my mind. The process of getting it printed, bound into a notebook, creating the cover letter to people I wanted to critique my work made the musical more real. And with the reality of it, the anxiety level again increased because the risk of people not liking it, or my not being successful in getting the work onto the stage or even knowing what steps are necessary to do so. The biggest fear, was of FAILURE!

It was no longer just Gregory and my story as told by me, it was now a document that was being shared with at least a dozen people. Some of the people which whom the book was shared included close friends, other acquaintances, some knew the story as Gregory and I had lived it, others have had experience in Broadway musical, some were young and some older, some Gay and some straight. I told everyone to be brutally honest and I believe they will. So more pain and anxiety.

Even while discussing the pain, difficulties, fears, anxieties etc of this process; I also feel very optimistic and positive. I have been going to a lot of musicals recently both in New York City and in Chicago: Hello Dolly, Tootsie, Charlie and The Chocolate Factory, Gypsy, The Band Visits, Dear Evan Hanson, and others.

As I sit in the ornate beautiful theaters, with the red velvet seats around me and red velvet curtain in front of me, as I feel the energy and expectations of the arriving theatergoers, as I hear the orchestra tuning up, as I experience the lights dimming and the usual preliminary announcements being made, and as the overture begins ... I imagine that I am experiencing MY musical beginning and can visualize what it will look like, sound like, and feel like. I hear the audience's laughter, sighs, and tears and feel the applause, I imagine opening night with so many family and friends in the audience and imagine being part of bows at the end of the evening, I feel the glass of white wine in my hand as I mingle at the opening night party. And I can feel it ALZHEIMER'S: The Musical! And so it will be!

ALZHEIMER'S: A Love Story

Across the U.S.A. and around the world! ALZHEIMER’S: A Love Story - Nice, Florence, Madrid, Durbin, Mexico City, Bogota, Prague, Hong Kong, Amsterdam, London, Leeds, Toronto!

France, Italy, Spain, South Africa, Mexico, Colombia, Czech Republic, China, England, Canada!!!

Gregory

It has been over half a month since I have written here. I find that I am still spending most of my time on the Alzheimer's Blog processing Gregory's passage.

So much has happened in the last month including his death, the arrangements for cremation and the cremation itself, writing an obituary for him which in part informed the obituary in the Chicago Tribune and in full was reproduced in the Windy City Times with my name in the "by-line."

There was also the planning of and experience with Gregory's Memorial at the condo (attended by over 100 people) and the Thank You Memorial at the Lieberman Center (attended by over 150 people.)

The condo memorial was comforting in the traditional Deli Tray Jewish Way including so much food: corned beef, pastrami, turkey, beef, lox, white fish salad, egg salad, chopped liver salad, onion rolls, rye bread, bagels, cream cheeses, cheddar, swiss, munster, cole slaw, potato salad, beverages, and more pastries than you would hope to gain weight over.

The Lieberman memorial brought family and friends as well as residents, residents' families, administrators, department heads, staff, CNA's, custodians, and more. Gregory was so well known and so loved by everyone at Lieberman. Food included pastry leftovers from the condo plus cookies, brownies, chocolate nut toffee, mini-candy bars, MandM's, coffee, tea, and lemonade.

The "More Than Ever Education Fund" is in full flight as Casa Norte plans for its unveiling at the First Annual Spring Education Luncheon. We raised close to $3,000 in contributions in memory of Gregory.

I drove to Battle Creek, Michigan to spend the weekend with Gregory's family. His brother and sister-in-law planned a Memorial Dinner with several of friends as well as family. Many memories were shared and stories told.

So if you haven't already, check out the Alzheimer's Blog for photos, processing, and tears as well as joy. http://mhorvichcares.blogspot.com